Despite being common, chronic fatigue syndrome remains a bit of a mystery. We’ll be uncovering some answers to help support you
Living with chronic fatigue syndrome (CFS) can feel like navigating a maze of exhaustion, uncertainty and frustration. For those living with CFS, every day might seem like a battle, but you aren’t alone on this journey.
What is chronic fatigue syndrome?
First things first, let’s shed some light on what exactly chronic fatigue syndrome is. You might hear of it being called myalgic encephalomyelitis. It’s a long-term condition with a wide range of symptoms – the most common of which is extreme tiredness. CFS affects many people worldwide and it can affect anyone, including children. It’s more common in women and it tends to develop between your mid-20s and mid-40s.
Despite it being a common condition, it remains misunderstood and often misdiagnosed, which means many people are struggling with its effects without having clear answers.
Picture a puzzle with missing pieces scattered across the table. That’s how scientists often describe CFS. While the exact cause is unknown, there are some theories. Research has shown that it may be triggered by an infection and there are also certain things that could make you more likely to develop it.
Some of these include:
• Viral infections like glandular fever
• Bacterial infections like pneumonia
• Problems with your immune system
• Having a hormonal imbalance
• Genes – CFS is more common in some families
Symptoms of chronic fatigue syndrome
From tiredness to muscle pain and sleep struggles, symptoms of CFS can vary from person to person. The severity of symptoms can also change from day to day, or even within a day.
Exhaustion overload
The main symptom of CFS is extreme physical and mental tiredness (fatigue) that doesn’t go away even if you’re well rested or have had enough sleep. This can make going about your normal daily activities difficult and even the thought of tackling your to-do list can feel like a marathon.
Most people with CFS describe their fatigue as overwhelming and it feels different to their usual type of tired. With some people, exercising can make the symptoms worse and this can even be delayed. For example, you might feel tired a few hours after you’ve exercised or the next day.
Sleepless nights & foggy days
Some people with CFS struggle with sleep. You might:
• Not feel refreshed after sleeping or feel like you’ve had a good night’s rest
• Keep waking up during sleep
• Feel tired, stiff or have flu-like symptoms when you wake up
• Feel tired and sleepy during the day
Some of the common symptoms of CFS are sometimes called ‘brain fog’. These include finding it difficult to:
• Remember words, names or numbers
• Concentrate or focus on more than one thing at once
• Remember things that happened recently
• React to things quickly
More than just tired
CFS isn’t just about feeling tired. Other symptoms include:
• Muscle or joint pain
• A sore throat or sore glands that aren’t swollen
• Flu-like symptoms
• Feeling sick or dizzy
• Having heart palpitations
Most cases of CFS are mild or moderate, but one in four people have severe symptoms. If your symptoms are severe, you might need specialist care.
Mild symptoms
You can:
• Go about your daily activities like work or housework, but this is difficult for you
• You might need to stop some hobbies or social activities to give you more time to rest
Moderate symptoms
You might:
• Struggle to move around easily
• Have problems going about your daily activities
• Not be able to work or continue with education
• Need to rest often
• Have problems sleeping at night
Severe symptoms
You might:
• Only be able to do basic daily tasks like brushing your teeth
• Be housebound or bedbound
• Need a wheelchair to move around
• Find it difficult to concentrate
• Be more sensitive to light and noise
• Take a long time to recover after activities like leaving the house or talking for a long period of time
Very severe symptoms
You might:
• Spend all your time in bed resting
• Be fully dependent on carers
• Need help with basic activities like eating, washing and using the toilet
• Be extremely sensitive to light and noise
• Not be able to swallow so need to be fed using a tube
If you have a CFS relapse, this means there may be times where your symptoms get worse. If you think you have CFS, it’s important to speak to your GP to make sure they can diagnose you correctly.
Diagnosing CFS
There isn’t a simple test to diagnose CFS, but there are guidelines to help doctors to diagnose it. Your GP might:
• Ask you about your medical history
• Give you a physical examination
• Offer you a test for example a blood test or urine test to rule out other conditions
Patience is key when waiting for a diagnosis. It can take a while for CFS to be diagnosed because some of the symptoms are like other conditions, so while this is happening, you might be given advice on how to manage your symptoms.
Guidelines to diagnose CFS include if you have extreme tiredness that can’t be explained by other causes and the tiredness:
• Has lasted a long time, keeps coming back or has started recently
• Means you can’t do things you used to do
• Gets worse after activity or gentle exercise like a walk
You must also have some of the symptoms from the ‘More than just tired’ section of the article. Your diagnosis should be confirmed by a doctor after other conditions have been ruled out and if you’ve had your symptoms for at least three months.
If your GP is unsure about your diagnosis or your symptoms are severe, they may refer you to a specialist.
Living with CFS
Here’s the silver lining – while there’s no one-size-fits-all solution, there are things you can do to help improve your quality of life and help with symptoms of CFS. From medication and therapy to lifestyle changes and self-care practices, there are a number of treatment options and finding what works for you is key. You should be offered a treatment plan that’s tailored to your symptoms.
There are some specialist treatments for CFS which include cognitive behavioural therapy and energy management.
Cognitive behavioural therapy (CBT) for mild or moderate CFS. This can help you manage it by changing the way you think and behave. If you’re registered with a GP, you might be able to access CBT and some other types of talking therapy through the NHS, but you can also explore the services available on the Boots Health Hub, like the on-demand talking therapy from Boots Online Doctor.
Energy management aims to teach you how to make the best use of your energy levels in day-to-day life. This can involve monitoring your daily activities.
There aren’t any specific medicines to treat CFS, but some can help to relieve some of the symptoms. Pain relief like paracetamol or ibuprofen (if suitable for you) can help ease headaches, muscle and joint pain. If you have long-term pain, you might be referred to a pain management clinic.
Lifestyle changes
There are some lifestyle changes that can make a difference to your quality of life.
Diet
Eating regularly and keeping a balanced diet is super important. If you feel sick, eating starchy foods and sipping drinks slowly can help.
If your CFS symptoms are making it difficult for you to shop or prepare food, you should be offered practical advice on how to keep a balanced diet.
Rest & relaxation
CFS can disrupt your sleep but having too much sleep doesn’t usually improve your symptoms. Think quality not quantity when it comes to resting. You can speak to your doctor for more advice on getting a better night’s rest.
Whether it’s a good day, a bad day or somewhere in between, by understanding chronic fatigue syndrome, you can take steps towards looking after your health and wellbeing.
2Access to prescription-only treatment is subject to an online consultation with a clinician to assess suitability. Subject to availability. Charges apply.
